Jan 28, 2009

news of luke

Sunday the wean to Luke's ecmo didn't go very well. They ended up turning it up a little higher and Monday they added the ultra filtration to help his kidneys keep up.

Our church family friends, John & Lela, came to visit on Monday and are still here with us now.

Early this morning Luke needed more support from the ecmo but his blood pressure was still pretty low. They tried backing off sedation to see if that would help like last time.

Dr. Canter came in and told me to get Troy and sat us down and explained his professional opinion on what happened. He thinks out of these episodes that the first one was rejection but these other two are from the lack of milrinone in his system. His heart was beat up more than they realized and he just couldn't get over it. The milrinone was started each time with episodes and when he started to get better it was taken off. By the time it got almost completely out of his system he would have another episode. This last episode Dr. Canter thinks he suffered a heart attack and part of his right side died. If we were to try to go for another transplant he would probably need to go on the berlin heart, wait for a heart, and then have a 20% survival rate for the first year of life.

We decided to pray about it and decided what we wanted to do and how we wanted to do it. We had John, Lela, Thyrena, Ryan (church friend),Troy, and I in the room. Plus the doctors and nurses. I put on some hymn music in the background. John annointed Luke's head for a blessing and Troy gave him the blessing with John and Ryan. The blessing said that he fulfilled his mission and has touched many peoples lives and released him unto our Father in Heaven. They had been clamping the ecmo, took out his breathing tube, gave him more sedation meds, and put him into my arms. I held him in my arms for a couple of hours visiting with doctors and nurses and those I mentioned before. We also got hand prints, foot prints, molds of his hand and foot, and locks of hair. As he left this mortal life I believe in Christ was playing followed by I know that my Redeemer lives.

My faith and testimony of the gospel of Jesus Christ reassures me that I will see Luke again. Families can be together forever and this brings me the peace to carry on.

We are still making arrangements but will let you know soon. Tomorrow we will venture the snow and icy roads to pick up Zack and Emily at my sisters house in Texas and tell them ourselves about Luke. We had Vance tell Jessica and then talked to her over the phone. We are thinking the funeral will probably be on Monday in Council Bluffs.

I am thankful for the tender mercies of the Lord for the extra time we had with him. Each time he got better, Christmas Eve out of the hospital with the whole family, hide-n-seek with Becky, playing tricks on Dr. Huddleston with the IV in hand, singing I am a Child of God with Amir swaping out IV's, watching CARS over and over and over again. There have been many blessings and miracles.

Love, Jamie

2 comments:

aejohanson said...

I am so very sorry to hear about your little boy. We too lost our son one month ago after a run on ECMO. We will pray for you and your sweet family, and pray you continue to have the strength the gospel brings.

gracielynn's said...

Thank you so much for your kind words.
I am so sorry to hear of your loss ..
I have to say Luke is not my son.. but my friends. We went to family night last night & the first thing I saw was his little hand . That bothered me more then anything >.
He was a sweet , sweet boy.. and fought so hard. It just wasn't meant to be.
Jamie and Troy have such a wonderful faith..
For three years, before Luke's birth they prayed. God's will..
They have been God's example to us all .

Again.. so SOrry to hear about your little boy.. I can't imagine..
God Bless you and yours !!
Lisa